Wednesday, July 27, 2011

We are 1/4 of the way there! :)

Sorry it's been so long since my last post, I really wanted to keep this blog as positive as possible. But... Lately I feel like everything has been such a challenge. Ryder is doing AMAZING as always but everything out there in place to help kids like him, are unavailable at the time. I am getting so worn out with empty promises on the equipment Ryder so badly needs. We are also being directed in a million different directions to seek help and resources, when in the end we are only being put on huge waiting lists. There is so much more I could go on about but I will just leave it at that. I am sure you would much rather hear about this amazing kid!

Ryder has learnt some new tricks in the past couple weeks. He has started sitting (while occupied) for longer periods of time, he has been pulling himself to standing on anything he can and the other day he was able to go from all fours up into high kneeling!! That was a huge moment as before that he wouldn't even go on all fours!! I feel like he is "able" to crawl but he just know's what works and that's pulling himself army style.

We are doing awesome with our online donations! We really can't thank you all enough!! We have raised a total of $2,950! Our goal is $12,000 so were 1/4 of the way there!! Thank you, Thank you THANK YOU!!!

Monday, July 11, 2011

Steps in the right direction....

Well today was a huge day for Ryder. We had our long awaited appointment at the Stan Cassidy Center for Rehabilitation in Fredericton. From the very start we were blown away with all the staff there. The therapists and doctors were amazing!! We had three solid hours with one on one (sometimes two on one) attention, all on Ryder. I feel we now have a better understanding on where he lies with his CP diagnosis. We also have a game plan for Ryder's treatment for the next little bit.

To start everything off he is definitely in need of a walker/gait trainer! They had one for him to give a test drive and he LOVED it! It was so fun to see him be able to just up and go wherever he wanted. He was beaming with excitement!! A very proud moment for his biggest fans!!



Hopefully he can get his own very soon! They were so impressed with his determination and how he just flew across the room like he does this all the time! So the walker is First on our list. Second he will have castings done in late September. Basically they will put both of his legs in casts just below his knee all the way to to bottom of his heel. They will angel his foot slightly to give better extension. After five days the casts will be removed and left off for a day, then new ones put on hopefully giving him his full proper extension. This processes may need to be done from time to time to insure his feet are able to come flat on the ground hopefully preventing surgery down the road. After the casts he will get braces for his legs (nothing like the one's Forest Gump wore) Tyler had to make sure of that.... Then around late November he will received Botox injections in probably both his arms and legs to help his stiff muscles to relax. This treatment is only temporary and may be done up to two times a year depending on Ryder's stiffness. He also had x-rays on his hips and knees today. We received a call from the Doctor just an hour after getting home saying they both looked great.

We are so excited and feel like the ball is finally rolling. We hated feeling like nothing was being done and we were just sitting and waiting with no clue what his future held. We still don't know exactly how everything will pan out but having a game plan and some goals make all the difference!

Just wanted to share one more video of the little guy. He's not walking here because he was so distracted by all the balls in the room! They were EVERYWHERE!!! It's cute! Man I love this kid!!!

Wednesday, July 6, 2011

Sitting Pretty :)

First I just want to give a shout out to everyone who has made donations so far! We have received almost $1400 in online donations!!! These donations are amazing and really do mean the world to us :)  Thank you, Thank you, THANK YOU!! We also now have his account set up through TD Canada trust but it wont let me access it online at the moment. If anyone has made a donation there THANK YOU as well :)

Since we started the facebook event and blog to raise money for sending Ryder to Ability Camp, Ryder has been making huge steps in the right direction. I am not sure if it's him feeding off my excitement and energy or just a coincidence but whatever is going on is definitely working!! It's almost been a full month since Ryder's last Physio/Occupational therapy appointment. With it being summer and everyone's vacations they had a hard time fitting him in. I was really worried about how his progress would be during this time without any therapy. Luckily for us what we have been doing at home seems to be working. This makes me so excited to think about how much progress he could make at Ability camp!!

The last few days Ryder has been pulling himself up onto anything he can. It's awesome but so scary at the same time. Once he's up he has no balance so he comes crashing down, FAST! I think we may need to invest in a helmet pretty soon here.... Two days ago I came into his room after his nap to see this:
                        I guess it's time to raise those rails :)

Then the next night in the bath he decided to pull himself onto his knee's and play holding onto his corner tub basket for the rest of the time. Now there's no keeping him laying down, he just wants to play upright. I don't blame him one bit! He's also been talking up a storm and trying new words on a daily basis. His latest thing to say is "Car vroom vroom" when he's playing with a car or he see's one. (Was really cute when he spotted them on his jams tonight :) ) He said "Hannah" (his little girl friend) just the other day and now says "NANA" whenever we get somewhere and he's excited. I think he think's Hannah will be wherever we go. He's starting to say "thank you" without being asked and will call out "momma" whenever I am out of his sight. He has started to wave on a more regular basis to people walking by or when someone is leaving and tonight he decided to blow his Nanny and Grampy kisses good night. It's all these what may seem to be "little" things that usually keep me going but today he did something HUGE and I still can not stop smiling!!!

                   

Ryder decided to sit and play for what felt like FOREVER before toppling over. As long as he was concentrating and playing in the sand he stayed sitting upright!! :)  This was the longest he's ever sat before and it was for probably around 10 minutes or so! I love how he's filling his tiny little dump truck up with sand!


After playing in the sand he decided it was a good time to go for a swim. Obviously Ryder didn't care he wasn't wearing his swim suit or that his poor mommy is afraid of the creepy crawlers in lake water! Like usual there was no stopping this kid from going where he wanted!! So off in the lake we went! We had fun, and a nice long bath when we got home :)

Sunday, July 3, 2011

Clap with me! :)

Just wanted to pop on quick before bed and let everyone know we are now at just over $800 in donations!! Again thank you all so much! 

Two very generous donations were made today that touched my heart more than these fine ladies could possibly know. One came from a dear friend who lost both of her twin boys at 24 weeks due to premature labor. Her loss rocked me hard. We were both pregnant with our twins at the same time but I did not even have the chance to share it with her. She helped me through my early stages of grief by just being there and letting me know I was not alone. The other came from a loyal friend who I love, yet have actually never met in real life! Our unique situation brought us together and I can honestly say I don't know where I would be without the support and guidance she has given me. She also lost one of her boys to TTTS and has a survivor with disabilities. The little critter has given our whole family such hope and inspiration as we follow his progress. Thank you both so much! xoxo

I also just wanted to share a quick video of Ryder from today. For the past couple months he has been able to knell behind a diaper box and actually play upright. This was huge for him as he still can not sit and always had to play laying on the floor. Well yesterday he slowly started to let go of the diaper box and balance on his knees! We have to watch him as sometimes he will slip into the "W" sitting which is a big no no from his therapists but this is such a HUGE deal for him and us! Anyhow today he started balancing more and more without the box and just for some shock therapy for his mommy he added some clapping!! It was so cute I just thought Id share :) 
         

Saturday, July 2, 2011

Feeling the Love :)

We have received some more than generous donations in the last 24 hours and I really can't find the right words to say or describe this feeling. I keep saying overwhelmed but usually that feeling with me is not such a good thing. This is me being overwhelmed in the best possible way! :) Some of the donations are coming from old friends, we haven't spoke to in years and some from complete strangers!! I thank you all from the bottom of my heart. We have received just over $500 in online donations and messages of more waiting for our bank account to be opened. Wow I am really just left speechless at the moment and I know this good karma will come back to you all, in your time of need. I am sure Ryder can say it better than me, so here it goes........


It was a nice day in Saint John today. I was really contemplating taking Mr.Ancy-Pants out to the Qplex for a swim but thought I should save it for a day Daddy can come too. Ryder and I still managed to have a fun afternoon :) I filled up his pool (with warm water only because I couldn't find the hose) and we relaxed and played in the yard. He even managed to stay upright leaned against the pool for a while :)

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                    He LOVED trying to splash Mommy!!

Friday, July 1, 2011

Today we count our blessings

We are feeling so loved and supported by our friends and family, now more than ever. I found out about the Ability Camp on Wednesday and just two days later we have so many people saying they want to help get Ryder there. We are so grateful and blessed to have you all in our lives. Through all the heartache and pain we have endured in the last two years it's moments like this that remind us it's all going to be okay.

There is a Paypal "Donate" button on the side bar and we will be going to the bank on Monday to set up an account in Ryder's name. We thank you from the bottom of our hearts. I will continue to blog about Ryder's journey and as you follow along know that you had a part in where he is today.

yfrhtrjhttjg- Love Ryder

Happy Canada Day!